Sideline Advocacy

As many parents do on an autumn Saturday morning, I headed to the soccer field to watch my youngest son compete in a match. It was early, chilly, and clear from the very beginning of the game that the competition was tough. Not having extensive knowledge of the game, I typically try to restrict my sideline banter to "Go Knights," or "Way to hustle," or sometimes even "Good job, keeper!"

This game was no different for me, although other parents (from both teams) had plenty to say. Several parents thought that the ref wasn't fairly calling the game, and that seemed to lead to an escalation in sideline tensions. I eventually stood up, forgoing my uncomfortable perch on a flimsy foldable chair in favor of pacing a bit as we watched the boys run up and down the field.

At one point, a boy from each team collided, but the play continued as the ref apparently just didn't realize that there were possible injuries. The sideline erupted with frustrated calls from parents. I hate seeing kids get hurt during games, so I was focused on the field, willing each player to get up and hoping they weren't seriously injured.

Then, the lady next to me called out, perhaps to the ref "How do you just keep running past them? That is so retarded!"

The tension of the game got to me, and I immediately snapped "Hey! That word is not ok!"

She and the woman sitting next to her looked at me, surprised. I was immediately disappointed in my approach, as my words had come off with an edge that I had not intended. But, in the heat of that moment, it was definitely there. I tried again: "Look, I know you're upset, but that is not an appropriate word to use."

The lady sitting next to her came to her defense: "She didn't mean it that way. She doesn't know."

I attempted a smile. "Ok, well, now we know. It's inappropriate. I'm a parent of a child with a disability, and it's not ok to say that."

The lady shot back, "NO, you're just perceiving it the wrong way."

At that point, I stopped. I could have gone on, but I knew that I was just really angry and anything else I would say would make the matter worse. I was seething, though. Yeah, calling her out like that was perhaps not the best approach, but turning it around and trying to make it my problem? Like she had a good reason for using that word that I was just not willing to consider? No. Not cool. She remained fairly quiet through the rest of the match, but at the end of the game (after a full-on parent sideline meltdown, from parents of both teams, which I didn't participate in and was disheartened by), she turned to the parents on our team and loudly declared "All y'all's just rude."

That's the thing with advocacy: it can come off in a rude manner, especially if you find yourself on the other end of it. It can be uncomfortable, and it's not always easy. However, the need for a change generally doesn't come from a place of comfort. While I didn't deliver my message as eloquently as I would like, I still got the word out, loud and clear. Hopefully they truly heard me, and maybe they went home and realized my intentions. We all need to do the hard work to create a kinder, more inclusive place for our kids, and for each other.

Here's hoping that the next soccer match isn't quite as eventful.

I Am Aware: Thoughts on Down Syndrome Awareness Month

October is an important month in the Down syndrome community, a time to promote awareness and acceptance by educating our peers and sharing our stories about our loved ones with Down syndrome. I’ve seen many essays and social media posts dedicated to Down Syndrome Awareness Month; so many friends and fellow advocates are doing a wonderful job informing their greater communities about what Down syndrome is. Having celebrated DSAM for many years now, I was struggling with how to promote awareness this month. After much consideration, I discovered that I am very aware of Down syndrome. I mean really, really aware. Because so many facts and advocacy tips are already circulating, I’ve decided that my contribution to Down Syndrome Awareness Month lies somewhere in my own personal experiences.

I am aware that building awareness and acceptance of Down syndrome is a responsibility 365 days a year, not just 31 days in the month of October. Many people have shared that they celebrate their loved ones with Down syndrome every day of the year, so they don’t see the importance of doing it just one month, and I agree with that…to a point. It takes a conscious effort to carefully and consistently educate our families, friends, educators, and community members year round so that this information becomes second nature, and not just something that is pointed out one month a year. However, upping our game during October is a great way to increase our advocacy skills and highlight some major elements and key concepts that we want to share.

I am aware that inclusion is not a “one size fits all” concept. When I advocate for inclusive opportunities for my son, Alex, or share my thoughts about inclusion, I inevitably hear something along the lines of “that would never work for my child.” And I have experienced that, too; after reading about different circumstances, I’ve often thought “that’s amazing…but it would never work for Alex.” And that’s ok! I wouldn’t want an opportunity to not be available for someone else because it wouldn’t work for my family, nor would I want to see something forced on someone else if it wouldn’t be appropriate. Inclusion should be a fluid, customizable concept that benefits an individual, and I think that special education would best function in this manner as well. Supports should look different, because they are serving different individuals, but the big picture should be the same. It is challenging at times, but most certainly worth it.

I am aware that many people have good intentions, yet low expectations. My son has met many wonderful people in his life, most of whom only wish the best for him. I’ve noticed, though, that many of us need to raise our expectations in regards to individuals with disabilities. These individuals can and will accomplish extraordinary feats, but we may never know exactly what they can do until they are encouraged to try and then fully supported.

I am aware that all of my kids are awesome. Our family dynamic is different, and because of that, I’m watching my kids become amazing people. They began learning, at very young ages, that they can advocate for their brother, and other individuals, with Down syndrome…and that their voices matter. I believe that they will only continue to grow as advocates, and that this will benefit them (and all those around them) for the rest of their lives.

I am aware that I am stronger than I ever thought possible, and I have Alex to thank for that. Like my younger kids, I am finding my voice as an advocate, and realizing that my part in this story is a powerful one that can help others. Learning how to advocate is empowering, and knowing that I am making a difference is rewarding.

I am aware that there is a lot of work to do. Advocacy doesn’t end.  I don’t think there will ever be a time when I will sit back and say “Yep. I’ve done all I can for my son, and there’s nothing left to learn.” It just won’t happen. We can all do so much to help our loved ones with Down syndrome flourish, and we can always find ways to help build awareness and acceptance in our communities.

I hope you’ll join me in taking the time to build awareness and acceptance of Down syndrome this month, and also learn how to best educate, support, and include individuals with Down syndrome well after the calendar flips to November.

My reason to celebrate #DSAM